It’s funny the way God works sometimes. I have about four unfinished blog posts saved in my cue, most of which are no longer than a few short sentences. Others have been fully written in my head, but haven’t even made it onto the screen. No matter how many ideas kept popping into my head this past month, something has kept me from posting anything since my last entry. It’s almost like I needed that entry to float around here for a while. Like I needed it here, waiting for me, so I could absorb all that it meant before moving forward.
I meant — and felt — every word I wrote in that entry. Yet, it wasn’t the whole story. Just a half-step toward a full blown leap of acceptance I wasn’t ready to take yet — and certainly not one I was ready to share.
Last week, I took that step. And today, I feel ready to share it, although I admit that the feelings are still pretty raw. Actually, I don’t know if “being ready” has anything to do with it. I just feel like I need to share it. My head — and my heart — need to release.
So here goes…
Brooklyn has spent the last few months working her butt off. A physical therapist comes to our home twice a week to work with her for about an hour, but I work with her every day for about 1-2 hours, depending on how crazy things are around here. This includes time in her stander for weight bearing and time in her RGO brace and walker to practice walking. It’s a part of our daily schedule, and the girls have even helped me find creative ways to keep Brooklyn motivated and happy. As you can imagine, those moments are the ones that make it all seem worth it. Not only because Brooklyn is getting stronger, but because I see Emma and Kendall at their very best…and perhaps I see the best in myself as well.
If you have followed our journey at all, you know that Spina Bifida is all about waiting. There is no real way to accurately assess nerve damage and physical limitations, so you just have to wait and see. Sometimes it’s a matter of therapy and muscle strengthening, and sometimes it is a matter of what I have started to call “heart strengthening.” In other words, it’s a matter of acceptance.
I have said before that there have been images in my heart of what Brooklyn’s future will look like. Those images have included a little girl with pigtails walking with arm crutches. Maybe a wheelchair for longer-distance adventures like the zoo, but for the most part, in my head — in my heart — she was able to walk with little assistance.
Back in January, when we had our muscle test, there was really no trace of any gluteal (butt) muscles. I have said all along (and was told) Brooklyn has strong quad muscles and that’s all she needs to walk. That is true; however, you need gluteal muscles to stand.
As Brooklyn and I have worked together these last few months, I have been amazed by her determination; the way her mind wills her legs to “KICK!” even when the rest of her body isn’t quite able to keep up. She can kick, yes, and she can move forward, but her back is very arched and her balance isn’t secure enough for us to just let her go. She wants it — we all want it — but her body has its limitations. That’s just a fact.
So I finally asked the question the other day. The question I know my PT and our other specialists wait for us to ask because they don’t want to make any predictions and maybe because they know we need to be ready. So I asked, and it looks like we need to start thinking about ordering Brooklyn a wheelchair.
I’ve struggled the last few weeks over my fear of this word — this new image — when I’ve known it was always a possibility. Some of you reading this may even thinking, “Duh, of course, she needs a wheelchair.” But this whole hope/acceptance balance thing is tricky. I have tried my hardest to take one step at a time and I know God can do anything, but I am learning that at some point, there are realities you have to embrace just to get through it all.
I’m not really sure what I’ve struggled with more — my disappointment or the shame of my disappointment. If the goal is to give Brooklyn independence so that she can get wherever she needs to go, does it matter how she gets there?
Well, to a Mama’s heart, it does matter. Honestly, my heart is broken. And still breaking. The tears are falling as I type, and I hate that. I know this shouldn’t matter. I know Brooklyn is happy just as she is, and I know God has a plan. But it still hurts. A deep, throbbing hurt that turns my stomach and makes me feel utterly helpless. Sometimes, I feel as if I failed her. I know in my head it is not my fault, but my heart doesn’t quite agree. I am her mother — the one who carried her — and if you too are a mother, you know that this is a feeling you really never escape.
And since I am laying this all out on the table, I might as well tell you that this whole acceptance thing happens in waves. Just when you think you have it under control — BAM! –something hits you and the pain is as raw as it was on that first day. This time, there were actually two waves of grief. The first was just the overall disappointment of her challenges, while the second was the one that compares her to all the other little Spina Bifida rock stars I have come to know. Rock stars I have seen through their early stages that are now taking steps, playing sports, and standing in photos. It is that second wave that throws me the most, as my heart battles with feelings of joy and triumph and, well… I’ll just say it… jealousy.
Perhaps the hardest part of all of this is that I can see the determination, the will in Brooklyn’s eyes, and what I can’t handle is that some day she may be disappointed, too. Her spirit is such a wonderful mix of strength and sweetness, and more than anything, I don’t want that to be taken away from her.
But it is that realization that pushes me to get past this. To let myself feel and express and not be ashamed so that when she comes to the age of understanding, I am over it and I can encourage her to embrace her life and keep kicking. God gave her that spirit, and I believe — I have to believe — He will not take that from her.
I also realize I have a role in that, too. I can’t mope around and act like her life is something to be sad about because, well, it isn’t. Her life is a beautiful, wonderful, glorious miracle that I wouldn’t change for the world.
For.the.world.
And so just like in those early days, I am clinging to His promises, letting the tears fall, and digging deep to find the will to move forward. Yes, my image has been altered, heart adjustments are being made, and we will order that wheelchair. But Jeff and I have promised each other that no matter what, we will encourage her determination, to keep her kicking, even if it’s not all the time. That no matter what her mode of transportation is, we will never let her give up. We will do our best to breathe as much life into that spirit as we can because that is about all we can do. The rest is up to Him.
I am broken, yes, but as the days pass and I find the strength to hand this over to Him, I can feel His peace and power in my weakness. And the more I lean on Him, the more I can feel the hope finding its way back into my heart, pushing out any preconceived images I have been holding on to. Because the only image that matters here is the one He created.
The love I have for Brooklyn outweighs any of this pain and that is how I know it is all going to be just fine. Just like He planned.
